Autism prevalence rose 1 percent over past several years, according to parent reports

by José Martinez

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Based on parent reports, federal researchers said autism prevalence among children has increased about 1 percent since 2007, putting the overall prevalence rate at about 2 percent. D. Sharon Pruitt/Flickr Creative Commons

The percentage of parents who reported that their children have autism rose significantly over the past several years, which experts attribute to "increasing recognition" of the condition in undiagnosed children.

The National Institute of Mental Health defines autism as a group of brain developmental disorders, all of which are collectively referred to as "autism spectrum disorder." Among them are classic autism, Asperger syndrome and the rare Rett syndrome. Children with autism will generally have difficulty communicating, have difficulty "engaging in everyday social interaction," and exhibit "repetitive motions or unusual behaviors."

Researchers said it's unlikely that the increase reflects an actual rise "in susceptibility to the condition":

[These] findings suggest that the increase in prevalence of parent-reported ASD [autism spectrum disorder] may have resulted from improved ascertainment of ASD by doctors and other health care professionals in recent years, especially when the symptoms are mild.

That "improved ascertainment" could be due to multiple factors, wrote the authors:

Better autism awareness among parents and health providers.

Better access to diagnostic services.

Changes in the criteria that determine whether someone gets screened or diagnosed for the condition.

An increase in the number of special education sites.

Autism in South L.A.

Areva Martin, the president and co-founder of Special Needs Network, Inc., noted that the study's findings means autism's prevalence rate moved from 1 in 88 to 1 in 50. It's "absolutely a great thing," she said, in the sense that more children with the condition are being diagnosed and there's more awareness.

"Early identification and intervention is key," she said. In South Los Angeles, Martin added, that often doesn't happen because of a widespread lack of "access to quality care, which includes trained qualified professionals who can both diagnose the condition and then provide intervention services."

The ideal window for diagnosis, she said, is when a child is one or two. That way, health providers and professionals can get them started on a regimen of intensive therapy that runs anywhere from 25 to 40 hours a week, which can be hugely beneficial.

"If a child doesn't get identified before kindergarten or first grade, they've missed four or five years of that kind of intensive therapy," said Martin. "That can have a substantial impact on educational outcomes and the development of social skills."

But in South L.A., delayed diagnoses are all too common, because of the area's shortage of people who specialize in diagnosing autism. "If you take your child to get a routine well-child checkup, and if the professional who is seeing the child isn't qualified to diagnose him, or doesn't have the expertise or experience, that child may not be diagnosed until he's school age – five or six," said Martin.

The cost of autism

There are also financial barriers. In July 2012, SB 946 went into effect in California. It's an insurance mandate that requires private health insurance companies to cover autism therapy. Excluded from that mandate, said Martin, were families on Medi-Cal. So those families have to find somewhere else to turn – and there aren't many of those places.

One is the state's Department of Developmental Services, which provides support to people living with five disabilities, autism being one of them. But it can't cover everyone. "Kids are frequently deemed not eligible," said Martin. "It creates a real issue."

One that's virtually insurmountable, financially speaking – Martin said initial assessments can cost up to $5,000, and subsequent therapy sessions can run hundreds of dollars an hour.

Despite that, she remains optimistic about the autism landscape in South L.A. Martin says 10 years ago – even five years ago – conversations about autism weren't happening in that part of the county.

"But the fact that people weren't talking about it in South L.A. didn't mean there weren't kids with autism in South L.A.," she said.

Now Martin says the conversation about autism in South L.A. "has come of age." Which is good, she added – because the challenges facing children living with the condition in the area are substantial.

"You are talking about a community that is plagued with a lot of health issues," said Martin. "Today it's diabetes, obesity, cancer – unfortunately, African-Americans and Latinos in low-income communities are already on the wrong side of these health crises. All these disparities in terms of access to care and quality of care with autism have been no different.

"I think there's so much more that needs to be done in terms of educating people and policymakers and funders and folks who really move resources in our community," she added.